Rick - What a wonderful piece of writing.  No wonder you are wanted by
the NPR station.  However, I don't think you should worry about what
"other" people think.  It is what YOU think that matters in your
progress. Of course, I speak with tongue in cheek, because I don't have
PD.  However, I had a quad by-pass in August 2003 and a mastectomy in
August 2004 (something about August, I'm already dreading for 2005).  I
also was hospitalized for 5 days with a staph infection.  Each time, I
held my head up high and did my thing.  I play the piano for my church,
and in 12-1/2 years, I only missed a Sunday when I was hospitalized.
Three weeks after my quad by-pass, I drove myself to Church and played,
and same with my mastectomy.  So even though I've not experienced PD, I
still feel I can say, Attitude is very, very important. Best to you -
again.  Jo Ann

On Fri, 18 Mar 2005 09:48:25 -0500 Rick McGirr <[log in to unmask]>
writes:
> I don't mind your posting to the listserv.  It's actually good
> therapy
> to share my concerns with you and everyone, as well as your
> reactions
> to my statements and answers to my questions, and vice versa.
> (Shades
> of "Fight Club"?)
>
> Funny then that I have this hesitation to go public on the local
> level.  I was writing a piece as a 'listener commentary' for the
> local
> NPR station, and I...never finished it.  Most people don't know yet
> that I have PD, and for now, while I'm still 'functioning within
> nominal parameters', I'd just as soon not announce it on the radio.
> I
> have piano students, I book gigs for the band, I freelance as a
> musician.  It would just complicate things, with people always
> asking,
> "How ya doin, Rick?" with that extra-earnest tone, and wondering if
> I
> can still play.  (Yes)  There are those who know about it, and I'd
> rather they not ask.
>
> I know I know, my little buddy will end up eating me alive, I don't
> need to be reminded.  I've come quite some way in accepting my...
> condition.  (almost said 'fate'.  Don't believe in it, never give in
> to it.  Wouldn't be prudent at this juncture.)  I've also gained a
> lot
> of toughness, partly through the energy and support I get from being
> a
> member here.  Everyone shares that common bond that goes beyond the
> mundane-ness of religion and politics.  What a boost it is to
> realize
> that.  And I get a real boost from those on the list that have been
> battling for a lot longer than I.  These people are the definition
> of
> the word 'tough'.
>
> Fear?  Fear is having your town torn up from the sky.  Fear is being
> the only survivor of an attack by machete-wielding militia.  Fear is
> being an AIDS orphan.  Fear is having to let go of one child to save
> another from a tsunami.  Fear is sitting in a mud puddle waiting to
> die of starvation.
>
> PD?  Piece of cake.
>
> Well, I usually wake up and write something.  Thanks for being
> there,
> Ariela and all.  Good morning, world.
>
> Rick
>
> ----- Original Message -----
> From: "ariela" <[log in to unmask]>
> To: <[log in to unmask]>
> Sent: Friday, March 18, 2005 2:00 AM
> Subject: Re: (my progress report) / AMANTADINE... ? / calibration
>
>
> > i admire your resilience, rick.    you seem to go about fighting
> this disease with great courage, and heads-on!    alas, my PWP
> (bless
> his heart) would rather think as little as possible about his
> condition.   his philosophy is, 'i got plenty of time to contemplate
> this lousy disease when i'm off, why waste additional energy when
> i'm
> on.'    incidentally, when he is on, even if dyskinetic, he
> functions
> better than many perfectly healthy adults i know...  :)
> >
> > now re. DBS -- for a moment there i felt like sitting across a
> movement disorder specialist, just wanting to wring their neck for
> stubbornly asking this question yet again....  :(
> >
> > truly, this must be my all time pet peeve -- for chrissake, why
> even
> float this option before exhausting any and EVERY possible drug
> combination first???     has anyone else had that experience?   what
> else is there for treating PD if not drugs?    i know that DBS,
> unlike
> pallidotomy, is supposedly reversible (considering there's no
> ablation), but isn't this argument rather disingenuous, to say the
> least?   can you really believe that implanting electrodes directly
> into the thalamus, only to revisit after a while and remove them,
> would leave that tender organ called brain completely unaffected?
> if
> nothing else, just think 'scar tissue'!    not for nothing this
> delicate mass was encased in a skull (unlike other fine and
> sensitive
> organs we have)!
> >
> > but to go back to drug therapy -- my experience has been that
> doctors have their preferences for a particular regimen, and that's
> that!   you'd think they'd be blamed for running unauthorized
> experimentation, the way they stick to their original drug choice
> and
> prescription!
> >
> > oh, well.    incidentally, for the record, hear! hear! re.
> splurging
> on massage, exercise and the like.   i can attest first hand (ok,
> first witness) how important that is.   the trick though is to NOT
> concentrate so much on aerobic or anaerobic exercises (bulking up
> and/or cardiovascular workouts) but rather, concentrate on
> STRETCHING.
> it should not be done with the goal of expending energy/calories,
> but
> rather coaxing the joints and muscles -- EXTERNALLY -- into
> remembering (i.e., keeping) their limber state.
> >
> > when he is in israel (where he spends most of the year), my friend
> does HYDROTHERAPY, a treatment modality that has not quite made it
> to
> the states yet (i wonder why; perhaps because it's so obvious and
> simple... ?)     it's an amazing therapy that can best be described
> as
> a therapeutic massage in a small pool.   he gets out of such
> sessions
> not only loose and flexible, but if he starts while in 'off,' it's
> as
> good as getting an apokyn shot.
> >
> > anyways, there's a lot to be said -- and compared -- on this
> disease, and i'm much obliged for having this informative
> listserv...
> :)
> >
> > thanks for writing me, rick, and please do report on what you find
> about amantadine once you speak to your doc.
> >
> > best,
> > ariela
> >
> > ====
> >
> > > Hi, Ariela,
> > >
> > > I will look at amantadine, so I know what to say in reply.  I
> don't
> > > know much about it, only having glossed over the info to date.
> > >
> > > I am not far enough along to have experienced diskenesias
> myself.
> But
> > > in the time since I discovered my little buddy (fall 2000) I've
> gotten
> > > a lot tougher.  I must say, if I knew then what I know now, I
> might
> > > have not been so quick to use Sinemet.  In the early going I was
> > > rather wimpy.  "I will gladly pay you Tuesday, for a hamburger
> today."
> > > Just get these jitters out of my arm!
> > >
> > > I must say that Sinemet has been bedy bedy good to me. ;-)  I
> haven't
> > > yet had any of the bad side effects.  I just thought that now,
> while I
> > > have the strength and can better cope with the PD itself, might
> be
> a
> > > good time to really work on prolonging my usefulness as much as
> poss.,
> > > and to put off the bad side of Sinemet as long as poss.
> > >
> > > My neurologist told me that I now am at the top end of the usual
> > > dosage of Requip, but to aid my efforts to cut back on Sinemet,
> he
> has
> > > prescribed 10mg 3 times a day (up from 8 x 3).  Haven't started
> on
> 30
> > > per day yet.  I'll keep you posted.
> > >
> > > I really hope your PWP can get some relief, and some regularity
> out of
> > > drug therapy.  Remember there are the surgical options as well.
> Have
> > > you discussed DBS with your doctor?
> > >
> > > I also take selegeline, for the record, and an energy-boosting
> > > supplement, CoQ10.  And I'm always stretching and doing
> relaxation
> > > breathing, and every once in a while, I'll splurge on
> therapeutic
> > > massage.  $60 is a bargain for that kind of deep, if temporary
> relief.
> > > Every little bit...
> > >
> > > Good luck, Ariela.
> > >
> > > Rick
> > >
> > > ----- Original Message -----
> > > From: "ariela" <[log in to unmask]>
> > > To: <[log in to unmask]>
> > > Cc: <[log in to unmask]>
> > > Sent: Tuesday, March 15, 2005 3:01 AM
> > > Subject: Re: (my progress report) / AMANTADINE... ? /
> calibration
> > >
> > > rick,
> > >
> > > a new movement disorder neurologist we've now been seeing at
> mount
> > > sinai in new york has told us that amantadine is the drug of
> choice
> > > for dealing with dyskinesia.     it's the first i hear this take
> about
> > > this little-used drug....     but we're still keeping this
> option
> open
> > > as my PWP is now trying stalevo (after 4 years on sinemet +
> requip).
> > > he's having an awful time just getting calibrated -- he moves
> > > instantaneously between long and painful freezes to awful states
> of
> > > badly spastic dyskinesia.   there's just never a simple 'quiet,'
> > > 'calibrated' time.      it goes without saying that the dosages
> and
> > > frequency have been tweaked and re-tweaked, to not much avail...
> :(
> > >
> > > does it sound familiar to you, or anyone on the list?   can
> anyone
> > > please share what you do/have done/know about it?    (
> > >
> > > many thanks,
> > > ariela
> > >
> > > ====
> > >
> > > > But I just figure it might be worth a little extra pain in
> order
> to
> > > put off those nasty
> > > > diskenesias....
> > > >
> > > > Enjoy!
> > > > Rick McGirr
> > >
> > >
> >
> >
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